Diabetes, Blame, Complications & Truth

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

 

They set you up for the blame game from the very start of diabetes.  Mostly with the best of intentions health professionals tell diabetics that they can live a perfectly normal life if they control their diabetes. Do the right thing and complications won’t happen to you. In and of itself this is a hopeful message. When you are faced with the diagnosis of a life-changing and life-threatening condition you cling to those messages and you desperately want to believe them.  You follow the rules and convince yourself  that bad things won’t happen to you.  This message is reinforced over and over again, at health care appointments and from the plethora of information spewed out by diabetes organisations and picked up by mainstream media.

To speak against this “truth” of diabetes is to utter heresy and leaves you open to accusations of being negative and pessimistic or of not taking responsibility, or encouraging others not to take responsibility, for their health.  Well, I’ve been entirely responsible for keeping myself alive since I assumed full responsibility for my diabetes at twelve years of age,  so I’ll take my chances with the Defenders of the Faith.

What happens to heretics.

The DCCT proved that normalising blood sugar levels in people with type 1 was impossible.  There is no set of rules with which you can comply that will make your blood sugar levels like that of a non-diabetics.  So as soon as your pancreas packs it in you are at risk of complications and your risk cannot be reduced to zero-yet (perhaps technology like the closed loop pancreas will allow us to achieve normal a1cs without hypos).

The DCCT also showed that the lower your a1c the more likely you are to die from hypoglyceamia but the less likely you are to suffer a vascular complication.  Put like that this talk of “likelihood” all sounds less reassuring and certain doesn’t it? [This is somewhat of a simplification, but SO IS the message that good control will prevent complications].

Now don’t think I’m saying it’s not important to manage your blood sugar levels as well as you can. I think it is, for one thing I want to know that I’ve done as much as I can do to keep my eyesight and kidneys etc and the evidence is compelling that you really do reduce (but not eliminate) the risk or “likelihood” of serious complications by keeping your a1c in range. In the short term you also feel better if your sugars aren’t high.

BUT

Just like those type 1 diabetics who “failed” to stay alive on starvation diets prior to insulin we shouldn’t be blamed as though it is a moral failing to have imperfect control or develop complications.  Time and again I hear of diabetics being told that retinopathy is “all their own fault” and being treated with disrespect and an appalling lack of compassion by health professionals who believe complications are self-inflicted.  I must say I’ve been lucky with my own doctors but I’ve heard heartbreaking stories from fellow-diabetics and witnessed plenty of derogatory comments and judgementalism around the traps about “bad” and “irresponsible” diabetics to know these attitudes of blame are commonplace.

I’m not asking for understanding or empathy from health care providers (although it’d be nice) all I’m asking on behalf of all diabetics is the truth and that’s an acknowledgement that there are no certainties or guarantees, just degrees of risk, and nobody brought diabetes or complications on themselves (unless they removed their own pancreas with a pen knife or something).   We’re doing the best we can in less than ideal circumstances, blame and judgement is hindering rather than helping us.

For a more wide ranging and balanced view on complications, particularly on the fact that they’re not the beginning of the end, I’d refer you to an article I wrote some years ago as part of a larger project for the type 1 Diabetes network, http://t1dn.org.au/our-stuff/learn-about-type-1/complications/

As always I welcome any comments or thoughts on this far from easy topic.

8 thoughts on “Diabetes, Blame, Complications & Truth

  1. Melinda, I think what you’re discussing here is entirely true. While I don’t pretend to know much about Type 1 Diabetes, blood ratios etc, I do believe that everyone is different. You, alone know your own body, what you can and can’t manage. Some people can do everything ‘right’ and have it work, yet others can do the same and they might still end up with something going wrong. Classic example was my Mother who was told she HAD to go on blood pressure medication. She found it mucked up her head and her biorhythms to the point of madness, yet when she went to the doctor for advice and suggested that she might stop taking the tablets, her doctor went red in the face, became agitated and angry and basically told her she would die if she didn’t follow the direction that millions of other people had no problem with. Suffice to say, she has since come of them by substituting her diet with ‘red’ fruit/vegetables, coq10 and has stabilised the pressure herself.
    Melinda, having to face the possible failure of organs, the daily routine of ensuring your levels are constant and basically keeping yourself alive – well, even people who don’t have this drama stuff it up on a major scale. Science attains for perfection but the body is not a perfect machine, just a beautiful one. Loved this thought-provoking article.

    1. Thanks so much for stopping by and taking the time to comment Dana. Your mother’s experience is a text book case of non-patient centred care, and the paternalistic “do as I say or you’re non-compliant” approach that lingers in medicine, good on her for taking charge.

      I love your last sentence, “…the body is not a perfect machine, just a beautiful one.”, definitely worth remembering especially when the going gets tough, very nice, no wonder you’re a professional author. xox Mel

  2. Yes, the truth is that everybody experiences a different course with Diabetes. We all age at different rates and for different reasons. People do perpetrate the myth that perfect control means no complications, but they fail to also talk about the other end of the bell curve. There are also people out there who have never given much time to their diabetes, have horrible control, and still experience minimal complications. That being said, being mindful of your body, its responses to your food/environment/psyche, and also keeping an eye on your ‘numbers’ is more likely to keep your body in balance. Stress is a factor in your life which tends to age people faster. Stress and anxiety about the numbers can just make them worse.

    So relax, take the occasional elevation in blood sugar as just another bump in the road of life, and live your life with a clear conscience that diabetes is not your fault.

    John RN MSN

    1. Thanks for your comments John and yes what you say is true. I read recently of one of the first recipients of insulin, Elizabeth Hughes who was first injected with some crude sort of “cow juice” by Banting in the early 1920s at the age of 12 but she lived until the age of 70+, compared to today’s intensive regimes you’d think she’d be a certainty for all those nasty complications. There’s a certain amount of genetics, luck and cultural/environmental factors that play as well as or sometimes in spite of control.

      I think stress, anxiety and guilt are the most prevalent complications that damage the emotional and possibly physical wellbeing of people with diabetes (in places like Aust, the US and UK anyway) today.

      Cheers 🙂

  3. What you write is so true, Mel. It goers back to the moment of dx when you are told that you can’t eat this and that, that you must do this and must not do that. I was dx with retinopathy about 20+ years after dx with D. The extremely arrogant (and bloody expensive) ophthalmologist gave me the lecture about keeping my BSLs in range and practically told me that it was all my fault. Since then I have been lucky enough to meet much more compassionate HPs who realise, as my latest endo puts it, that D is ‘an art, not a science’. She, and my kidney specialist, both say that I’ve done extremely well to be so (relatively) healthy after 49 and a bit years of D. Your message needs to be read and heard by more HPs. I printed it out for DH to read, and I’m going to give it to my GP.

    1. Thanks Anon 🙂 & well done on the almost 50 years. It’s incredible isn’t it that ophthos can be so harsh, & that’s really commonplace 🙁 as I said on FB it really is a wonder that we can stay sane and relatively healthy with all the rubbish we have to put up with from people who should know better.

  4. After being admitted to hospital for dka, my daughter was told by not one but two doctors that next time she came in they should refuse to treat her, as she clearly wasn’t bothering to look after herself. She was in tears and I managed to track down one doctor and pointed out ( quite forcefully) that it was hardly a helpful response. I think the damage that caused was immense. Thanks to the help of a wonderful diabetic psychologist she is working through some of the issues you raise, but we shouldn’t have to be undoing the damage done by uninformed and insensitive professionals.

    1. Oh that’s just so awful to hear Teresa, words almost fail me. Talk about discouraging somebody from seeking medical help when they need it too, isn’t the first rule of medicine “do no harm”. I’m glad that you managed to confront one of the doctors I hope it made some difference.

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